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Itapia
Multiple Myeloma Discussion • September 5, 2023
Considering Prolia and Kyphoplasty: Advice?
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Hi my mother was diagnosed with MM 2020. She recently got diagnose with Osteoporosis and has a couple lumbar compression fractures. Her doctor is recommending PROLIA. Has anyone tried Prolia what are your side effects and experience? I am scared because I have read horrible side defects such as osteonecrosis of jaw, severe muscle and bone pain, and rebound or stress fractures increases? Also we are looking into possibly doing kyphoplasty. Any thoughts please advice
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lavenderYak
Multiple Myeloma Discussion • September 2, 2023
Deciding on ASCT for Mom in Remission
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Hello all. My mother was diagnosed with Lamba light chain MM in April 2023 at the age of 60 yo her FISH test was normal but had a few small bone lesions around her body. She started her treatment with a MM specialist at UCI in Orange, CA in June 5. Her doctor slowly started her on Dexamethasone first for two weeks, then every week or two Velcade, then Revlimid and lastly Daratumumab by July 11 her doctor confirmed she was in a complete remission 2-3 months earlier than average according to her doctor. The next step her doctor is recommending is an Autologous Stem Cell Transplant (ASCT) soon. We are hopeful but scared for this next challenge. We would appreciate your thoughts if this the best plan, other treatment alternatives for her or share your stories with your ASCT. Thank you so much.
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lavenderYak
Multiple Myeloma Discussion • September 2, 2023
Sharing Hope: Mom's Journey to Remission
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Hello all. I thought of sharing my mom's journey since being diagnosed with Lamba light chain MM in April 2023 at 60 years old. I hope to help or give someone hope just as some of your stories did to us. Her FISH test was normal and a few small bone lesions around her body per her PET scan. She started her treatment with a MM specialist at UCI in Orange, CA in June 5. Since my mother wanted to avoid having to get a blood transfusion as much as possible, her doctor slowly started her on Dexamethasone first for two weeks, then every week or two Velcade, then Revlimid and lastly Daratumumab by July 11 her doctor confirmed she was in a complete remission 2-3 months earlier than average according to her doctor. Although she did felt tired, fatigue at some times, specially after her infusions days once a week she did not have major side effects. We believe what helped her the most was her low carb and low sugar diet, taking daily vitamins D, B12, B complex, Iron, Folic acid, Vitamin D, and her green juice Beetroot juice every other day. She also takes IV iron and vitamins every week which are a big help with hydration and energy boost to withstand the treatment without interruptions and major side effects. The next step her doctor is recommending is an Autologous Stem Cell Transplant (ASCT) soon. We are hopeful but scared for this next challenge.
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Cyndi
Multiple Myeloma Discussion • September 1, 2023
Coping With Husband's Complications & Feeling Alone
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My Husband was diagnosed with MM in 2021 we have been through sct 2022, he is now in stage 3 kidney failure and heart failure. We have our good days and bad days.I am alone will all this we have a wonderful son who is going to school in TX, where he lives with his family. Thank you Cyndi
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rubyCrocodile
Multiple Myeloma Discussion • September 1, 2023
Concerned About Light Chain Plateau - Thoughts?
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Hello Community! I was diagnosed with high risk stage three IGG Kappa. I started my induction therapy on July 13, 2023 with VRD. My free light chain kappa was at 1934 before the treatment. After one week of treatment on VRD the Kappa's went down to 1647. In second cycle of treatment Isatuximab (Sacrlisa) was added to my weekly treatment. A week later my labs showed significant drop in kappa's, it went down to 429. I am on weekly four drug therapy of VRD + Isa. My light chain labs are done every 3 weeks. I am in my 8th week of treatment and my last labs during this week (8/30) show no improvement. Kapps are at 428. Is this normal or does this mean I am plateauing?
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Lareeree
Multiple Myeloma Discussion • September 1, 2023
Preparing for CAR-T Post-SCT: Any Tips?
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Hello Community, I am just about to begin the lympho-depleting chemo for Car T. I am diagnosed with MM since 2019 and just recently had an in-patient stem cell transplant as a bridge to my Car T, as my disease was so aggressive and relapsing constantly. I am 36 days post SCT and a little weary of going back into the hospital, but excited about finally getting Car T therapy and hoping to put these aggressive relapses behind me. Any advice for how I might fair well with this process? Thanks Brave Ones!
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Qunbin
Multiple Myeloma Discussion • August 31, 2023
Join a Webinar on Advanced AL Treatments
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Greetings! Please join us for a live Webinar event. Beyond Standard of Care Treatment for Light Chain (AL) Amyloidosis: The Promise of Tomorrow Presented by Heather Landau, MD Tuesday, September 26, 2023 3:00 PM ET Register here: https://www.pathlms.com/amyloidosis/webinars/36919 Heather Landau, MD, is a hematologist-oncologist and the Director of the Amyloid Program at Memorial Sloan Kettering (MSK) Cancer Center focused on increasing access to novel, effective therapies in AL amyloidosis and has investigated drugs at all stages of development. She has conducted multiple investigator-initiated clinical trials exploring novel agents and approaches, including consolidation and maintenance strategies in high-risk patients. She led the development of MSK’s Outpatient Transplant Service and is studying innovative ways to optimize high-dose therapy and transplant care. Pharmacokinetically dosed conditioning has the potential to truly personalize high-dose therapy and Dr. Landau has shown that delivering transplant care at home is safe and improves the quality of life and satisfaction of patients and caregivers.